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Richard Dawkins & the danger of generalisation in 140 characters

You have probably noticed that I don't normally jump on the bandwagon when someone makes a crass comment about disability - I might send a tweet or two but that's as far as it goes, I tend to think the Cllr Colin Brewer's of this world are not the mass voice of reason and intelligence and only represent a minority.

But today I really feel the need to write about someone who commands a huge global audience and is well known for his reasoned arguments based on scientific logic. Richard Dawkins is a respected scientist, Vice President of the British Humanist Association and Ethologist. He is the author of many best selling books on Science and Atheism and commands a huge worldwide following.

He has 1 million twitter followers and actively uses twitter and social media to engage with his worldwide audience. For those of you who don't use twitter, it only allows posts of 140 characters so content has to be precise, succinct and to the point.

Yesterday he had a discussion with one of his followers about the ethical dilemma of whether or not to continue a pregnancy if the foetus was found to have Downs Syndrome (DS). His response the question was:-

Abort it and try again,It would be immoral to bring it into the world if you have the choiceLater on in the threat another follower asked for his stance on autism (the follower was himself autistic) and terminating a pregnancy.

"People on that spectrum have a great deal to contribute, maybe even an advanced ability in some respects, DS not enhanced"

Not surprisingly there was a huge backlash against these comments both on twitter and other social media, and many well known Downs Syndrome Campaigners gave their opinions including my own friend Hayley Golenieowska from the blog Downsside Up, who wrote this article for the Huffington Post http://www.huffingtonpost.co.uk

And today Dawkins issued an apology on his blog, well the heading was "An apology for letting slip the dogs of Twitterwar" and an acknowledgement of the the fact that a reasoned argument can not be made in 140 characters, he then posted what he would have said to the follower who posed the original question had he had more than 140 characters in which to do so...

“Obviously the choice would be yours. For what it’s worth, my own choice would be to abort the Down fetus and, assuming you want a baby at all, try again. Given a free choice of having an early abortion or deliberately bringing a Down child into the world, I think the moral and sensible choice would be to abort. And, indeed, that is what the great majority of women, in America and especially in Europe, actually do. I personally would go further and say that, if your morality is based, as mine is, on a desire to increase the sum of happiness and reduce suffering, the decision to deliberately give birth to a Down baby, when you have the choice to abort it early in the pregnancy, might actually be immoral from the point of view of the child’s own welfare. I agree that that personal opinion is contentious and needs to be argued further, possibly to be withdrawn. In any case, you would probably be condemning yourself as a mother (or yourselves as a couple) to a lifetime of caring for an adult with the needs of a child. Your child would probably have a short life expectancy but, if she did outlive you, you would have the worry of who would care for her after you are gone. No wonder most people choose abortion when offered the choice. Having said that, the choice would be entirely yours and I would never dream of trying to impose my views on you or anyone else.”

He makes no mention of his comments on autism.

OK, now I have given you the background, here are my thoughts.

Daisy is our fourth child, she was very much planned. When I was 8 weeks pregnant I had the normal screening test that is routinely available in the UK, it's a non-invasive test called a nuchal translucency scan and measures the fluid at the back of the baby's neck this is compared against a chart to give a risk factor for one of the known trisomies (Downs Syndrome is trisomy 21), based on this risk factor parents can then choose to have a more invasive test, either amniocentesis or chorionic villus sampling (CVS). With our previous three children our risk for having a child with a known trisomy was around in in over 1000, not high enough for us to have any concern and certainly not high enough for us to choose to have an amnio or CVS. With Daisy, our calculated risk was 1 in 4. I have actually never met anyone else who was given this risk for a nuchal scan. We were offered a CVS and also offered an early termination if the CVS proved to be positive for a trisomy. We were devastated. The CVS came back negative and we thought we were in the clear.

Two things strike me from that time - the assumption by all clinicians involved that we would terminate and the lack of any information on reasons why not to terminate or even what a termination would involve.

After Daisy was born, thanks to the amazing work of genetic scientists, the genome mapping project identified the mutation that causes Costello Syndrome, a mutation on the hras gene. Daisy has the G12S mutation.

This means that it is now possible to screen antenatally for Costello Syndrome and a hundreds of other rare diseases. But because these diseases are rare they would normally only be screened for later in the pregnancy. At 20 weeks into the pregnancy we were advised to have a foetal heart ultrasound as the high nuchal translucency was a possibly indicator of other risks. We breathed another sigh of relief when that test can back all clear. It was only at 24 weeks - the age when a pregnancy becomes legally viable and a baby can be resuscitated and taken to intensive care - that I developed severe polyhydroamnios. This rang alarm bells with the doctors because it is another sign of an anomaly. This would be when further tests would be carried out to look for rare diseases. At this point Costello Syndrome would be picked up. At this point I would be eligible for a late termination as the doctors would consider having Costello Syndrome a viable reason to have this. I know this because I know of people who have made this decision.

I also know parents who had the nuchal translucency test and their risk levels were not deemed high enough to warrant more invasive testing, only to go on to have a child with Downs.

Dawkins refers to early termination being the morally right thing to do. So my question to him would be - what about the cases where Downs is not picked up antenatally? What about the cases where Downs is excluded by a worse syndrome (as described by Daisy's geneticist) is found? Is a late stage termination then the morally right thing to do?

And what about the keepers? People who decide to go ahead with their pregnancy, if we use the logic that terminating a Downs pregnancy is the morally right thing to do, is keeping a baby with Downs morally not the right thing to do?

If we follow this argument through are we potentially looking at a society that judges families on the fact that they kept their disabled child instead of terminating them?

And what about all the other rare diseases and syndromes? Why just pick on Downs? Ante natal testing for Cystic Fibrosis is now widely available, and for other heritable diseases such as Spinal Muscular Atrophy.

Logical scientists like Dawkins will advocate that testing will eradicate these diseases over time, but doesn't this start to look like eugenics? And if we allow this to happen where do we draw the line? Those that slip the testing net, that are damaged at birth or by disease, will we create a society which sees disability as failure - different and less. You may say this sounds far fetched but it's where the logic takes us.

The problem is, it's not all black and white, there are shades of grey in the middle and this is what makes us human.

Again following Dawkins logic - Downs = bad, Autism = good. I guess his comments about autism come from the fact that statistically there are more people with ASD working in science and technology than neurotypical people. But these are the high functioning ones, the Mark Zuckerbergs of the world. These are not the people with autism who are incontinent, non-verbal and requiring lifelong care, the type of people that Dawkins seems to think that people with Downs on the whole become. Conversely there are people with Downs who live independently, work and contribute to society.

Not all, but some - just like none of us really knows what life has in store but we make the best of the opportunities given to us and hope for the best.

In his clarification Dawkins is at pains to say that the choice is down to the individual and this is just his opinion. But Dawkins is seen as a thought leader, and as a thought leader he should not have been having a public debate viewed by millions without arming himself with more facts, without developing a better understanding of the situation, without trying to clarify the grey areas.

The disability community is not going to win the likes of Dawkins over with stories of how their disabled child has enhanced their lives (it's not a battle anyway, it's about representing a point of view). The only way the disability community can counter the crass arguments that it is morally the right thing to terminate a child with Downs or that all people with ASD have an enhanced ability is to show the world what our world is like.

We need to keep putting Disability on the agenda and to be questioning when it is not. We need to makes sure that people with disabilities have a voice and opinion too. So from accessibility, to care, to health, to finance, to education, to nutrition - for every aspect of our lives people with disabilities, their parents, & carers need to makes sure that their voices are heard. It is much harder to make sweeping generalisations and assumptions about peoples lives when you start to know them as human beings.

Nobel Prize Laureate Lester Pearson once said "How can there be peace without people understanding each other, and how can this be if they don't know each other"

In the same way, how can we understand the world of disability if we do not know it.

I hope that because of the huge backlash over Dawkin's twitter conversation he may feel moved delve a bit further into some of the grey and contentious areas in his arguments, I'm not seeking to change his mind, his opinions are his, but at least base them on a deeper understanding of the reality of his hypotheses.

The more the science of genetics advances the more moral and ethical questions it throws up, the closer we are coming to seeing a resurgence of eugenics in another guise. Surely Dawkins himself should appreciate that such issues need to be the subject of reasoned, informed debated and certainly not limited to the personal views of one thought leader in 140 characters.

2 comments:

Exactly. Where do we draw the line, and who has the right to start playing 'God'? You're right, there are a lot of grey areas in the middle, but I'd say he stepped right over them without any due thought and consideration, and as a 'thinker' isn't that what he is supposed to do?!

And the ultimate extension of this thinking is the euthanasia of people who develop disabilities during their life. I always think this view is down to extreme capitalism: the idea that if you're not an economic unit, then your life is worthless :(

I have four extraordinary children, my two boys have a diagnosis of high functioning autism yet they could not be more different, my eldest daughter is a creative social justice warrior, my youngest daughter was born with a very rare genetic condition.

In December 2015 I also became a widow, my husband, the father of my children & partner of 27 years, Andy, died of cancer, leaving us with a gaping hole in our lives. 13 months later our darling daughter Daisy died.

My life was never going to be predictablebut as Andy always said, it is what it is, it's how you respond which makes the difference.